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Friday, February 21, 2014

Injured teen Boston Marathon survivor Gillian Reny and her family are giving back through the Gillian Reny Stepping Strong Fund

When Gillian Reny arrived at the University of Pennsylvania last August, she longed to be an ordinary freshman. She moved into a dormitory, took psychology and writing courses, and checked out fraternity parties. But it was hard to keep the past at bay.

It was just days before classes began when Reny started walking again — on crutches. Her scars were still healing. And she struggled with how to answer when new acquaintances asked what had happened to her leg. Before long she made close friends on her hall and shared her story: She had nearly lost her right leg in the terrorist attack on Marathon Monday.

In the minutes after Reny, now 19, was whisked into the Brigham and Women’s Hospital trauma unit, doctors were confident they could save her life. They were not so certain they could salvage her mangled leg. For the next few days, that question hung in the balance.

But through a series of fortunate turns and critical medical decisions, the teenager was able to avoid amputation. Though her rehabilitation is ongoing, and she could require more surgery, Reny rarely needs crutches anymore. Now, 10 months after two bombs exploded near the finish line, her family is launching a campaign to raise $3 million for trauma research at the hospital, which they hope could help others at risk of losing limbs.

WENDY MAEDA/GLOBE STAFF

Marathon bombing victim Gillian Reny and her mother, Audrey Epstein Reny, were back at Brigham and Women’s Hospital for another appointment on Tuesday.

The Renys are jump-starting the Gillian Reny Stepping Strong Fund with an undisclosed sum and have formed a team running in this year’s Marathon to help reach the goal. The money will pay for research on limb regeneration and transplantation and on the use of stem cells to regrow damaged bones and skin. Some of the work will be done in collaboration with Spaulding Rehabilitation Hospital. The fund will also support training for plastic surgeons in repairing traumatic injuries.

“These are things that would help someone like me,’’ Reny said during an interview at her Beacon Hill home this week. “I really feel good about what we are doing.’’

A key in Reny’s recovery, for example, is whether the broken bone in her lower right leg grows back completely to fill in the one- to two-inch section that was blown away. Dr. Mitchel Harris, an orthopedic surgeon at the Brigham, said her bone continues to regenerate, but he wishes it would grow faster. He said developing a medical recipe to speed up bone formation would be “the holy grail, and that is part of what the Renys are supporting in the research lab.’’

Gillian’s parents are executives in their family businesses, she with a real estate development company and he in the printing industry. They have been private about the trauma they experienced last April 15 and exceedingly protective of their injured daughter, but they decided to speak about it to bring attention to their fund.

Gillian was on Boylston Street with her mother, Audrey Epstein Reny, and her father, Steven Reny, waiting for Gillian’s older sister, Danielle, to cross the finish line, when the blasts occurred.

The pressure-cooker bombs shot shrapnel into the crowd near ground level. Sixteen bystanders lost legs; two of them lost both legs. Their limbs were either completely torn away or were clearly too damaged for surgeons to restore without risking their lives. But a small group of additional patients, including Gillian, were in a gray zone.

Awake and in pain, she was among the first wave of patients who arrived at the Brigham in ambulances within 20 minutes of the explosions. A hand-sized chunk of skin, muscle, and bone was missing from her right calf, and shrapnel peppered her left leg.

“I knew from seeing the destruction of my legs that something very serious had happened,’’ she recalled. Her parents, too, could see that her injury was extensive. Audrey Reny pleaded with doctors to save the leg, in part because her daughter had been a dancer since she was 3 years old. She had trained with the Boston Ballet and later — during her high school years at Buckingham Browne & Nichols in Cambridge — with the Alvin Ailey dance company and Boston Youth Moves.

Within minutes of her arrival at the hospital, surgeons wheeled Reny into an operating room to stop the bleeding and clean the wound. When plastic surgeon Dr. Eric Halvorson first saw the teenager’s injury, he thought “this person could lose her leg,’’ he recalled in an interview. But when he reached his gloved hands inside the gaping wound, he was amazed to discover that a vital nerve was undamaged, despite the devastation around it.

An imaging test called an arteriogram showed the major blood vessels were also largely intact — a second piece of reassuring news. Still, doctors were concerned about how much calf muscle Reny had lost.

Surgeons brought her back to the operating room the next day and installed a metal rod and screws to hold her fractured tibia together. By the Thursday after the bombing, doctors decided she could withstand the much longer operation to transplant muscle, blood vessels, and skin from her abdomen and thigh to repair the injury.

The timing of the surgery was crucial: It had to be done as soon as doctors were sure the wound was absolutely clean, to prevent infection from an outside source.

Over the next few days, it became clear that blood was flowing through the transplanted vessels and the operation was a success. Audrey Epstein Reny said that she cannot pinpoint the moment she felt her daughter was out of danger of amputation, but that the family grew increasingly hopeful with every day that passed.

Gillian spent several weeks at Spaulding before going home. Awaiting her was another big decision: Penn, which was her first choice for college, had sent Reny an acceptance letter before the Marathon. She was determined to go as planned, but doctors, especially Harris, were very cautious.

“Her parents would ask me, ‘Medically, can she go?’ I would say, ‘Yes,’ ” he recalled. “They would ask, ‘Would you send your own daughter?’ I would say, ‘Doubtful.’ My thoughts were about the incredible amount of pressure and the transition while on crutches and not knowing the status of her limb.’’

But Penn was very accommodating, giving Reny plenty of time to decide and offering a first-floor dorm room close to classes. An appointment in mid-August, during which X-rays showed that her bone continued to grow and strengthen, was the deciding factor.

Reny opted, with her parents’ support, to start college but with a reduced workload — three classes instead of four to leave enough time for physical therapy. Her mom was not surprised she wanted to start school; her daughter has always been determined and hard-working, she said.

“A terrible thing happened to myself and my family, but more and more I wanted to move on from it,’’ Gillian said. Living in another city would also provide relief from the frequent newscasts about the bombing. Her mother stayed in Philadelphia for most of the first month in case Gillian needed her. There were no emergencies.

Now, Reny has good days and bad ones, when she is in pain. “I can have a great week and then wake up and feel terrible,’’ she said. She walks normally, though she is not dancing. She was planning to continue studying jazz dance in college, but it is unclear whether she will be able to do that.

Imaging tests this week showed her bone continues to grow. In her usual sunny style, Reny wrote in an e-mail, “I wish it had healed entirely by now, but it could have been worse!”

She has settled into school, and those hard conversations with other students about her leg are no longer necessary. “I feel like a normal college freshman,” she said, “which is all I ever wanted.’’